Dude Sutton: Plymouth parents raise awareness of son's rare condition

Dude's mum Kerrie Sutton said they want to make "as many memories" as possible

The family of a Plymouth boy diagnosed with a rare genetic disorder have started a campaign to raise awareness of the condition.

Dude Sutton, aged five, has 4H leukodystrophy POLR3B, a condition which affects motor movements and will limit his life.

Dude's parents said the variant was so rare, only a handful of other children had been diagnosed in the UK.

Dude's mum Kerrie Sutton said they want to make "as many memories" as possible.

'We were broken'

Dude was diagnosed with the disorder in April 2022 after his parents noticed he was having difficulty walking properly.

Mrs Sutton said the family felt "broken" on the day of Dude's diagnosis because of the "not knowing" that comes with a rare disease.

She said: "The doctor, when he gave us the diagnosis, he wrote it on a bit of paper and he apologised for not knowing anything.

"It was handed to us on a scrap of paper with a website where we could Google what it was about. We were broken."

Dude wears a suit under his clothes which "hugs his body to help with his tremors"

4H leukodystrophy affects the nervous system; the name is short for hypomyelination with hypogonadotropic hypogonadism and hypodontia.

Dr Rahul Singh, a consultant paediatric neurologist at Guy's and St Thomas' NHS Foundation Trust, said there was currently no cure for the disorder but there was an "international consortium" of medical professionals working together to find the best way to help patients.

He said: "It is a relatively new condition, the 4H term has been described historically for ages but the cause for this genetic spelling mistake was found recently, like 2011.

"These are rare conditions, I wouldn't say there would be more than 20 patients, that will be too much.

"One of the difficulties we have here is that we don't know the exact incidence and prevalence of this condition in the UK.

"The aim is to see how best we can support the families, so currently there is no definitive treatment but there have been a lot of positive steps and advancements made."

'Happy memories'

Dude wears glasses to aid his deteriorating eyesight, a suit under his clothes which "hugs his body to help with his tremors", and uses a wheelchair when his legs get tired.

The family have arranged trips to Amsterdam and the US to meet with leading leukodystrophy experts and undertake tests for research.

They are also fundraising to take Dude on a once-in-a-lifetime trip to Disneyland "to make as many amazing happy memories as a family while he still can".

'Cruel disease'

Mrs Sutton said her son was "at the heart" of everything they did.

She said: "We've done loads of fundraising trying to raise awareness across the country, so that people know about the disease and that hopefully will plough money into research because there's no cure, no treatment and obviously that's what we want.

"It's a cruel disease that's going to steal our son away."

Dude's dad Tony Sutton said: "We just want awareness so we can get a cure, maybe not for Dude but for someone in the future."